The first meeting
The first meeting represents an important step in building a team from the diverse set of patient and public partners selected for the initiative. As with building any team, it is important to ensure individuals agree on a shared goal and values, determine the most effective ways of working together, and achieve clarity about roles and responsibilities.
A recommendation is to use the first meeting with your PPIE partners to collaboratively come up with a ‘Terms of Reference’ (template in Appendix M) outlining the mission, aim, activities and governance of the group, ways of working, and roles and responsibilities of individuals, including a code of conduct. The key is to co-create the ‘Terms of Reference’, not to draft it for review by the members, as the act of deciding collaboratively promotes ownership and commitment. A suggested outline for a first meeting can be found in Appendix N). Other things to keep in mind:
● Authority: Any actual or perceived asymmetric power relations will hinder effective engagement and need to be proactively managed. For example, it might be a good idea if team members who are doctors avoid using their titles with the PPIE members in order to prevent the perception of a hierarchy. Research team members may also feet that its important that they themselves should not have a right to vote so that decisions were made by members. Staff facillitators should aim to ensure that everyone is able to speak in meetings, with dominant voices moderated and quieter ones encouraged.
● Language: The primary spoken language should suit members’ needs, not research team facilitators, and efforts should be taken to promote equal opportunity for all members to contribute regardless of language skills.
● Environment: Ideally, meetings should take place in a neutral place where all members feel comfortable, rather than where it is convenient for coordinators to meet (e.g. research office, hospital).
● Confidentiality: To promote honest and critical input, meetings should be held in private settings and it should be clear that nothing that is shared will leave the group.
● Team-building: Fostering positive social relationships is important for effective teamwork, which can be achieved by incorporating small acts, like icebreakers and joint lunch, at each meeting.
The first task
A key lesson is that early wins are vitally important for morale, retention and sustainability. A recommendation is to choose your first collective task to be ‘low-hanging fruit’ - A task that can be completed easily and quickly with tangible impact. Successful completion of a task should be emphatically celebrated. It will demonstrate value to leadership and give everyone motivation to keep going with an initiative that can often feel theoretical, intangible and aspirational.
First tasks could include creating a study lay summary (written, graphic, video), reviewing a consent form or public-facing material, or sharing the findings of a study (social media, video). Of course, creating, ratifying and publishing a ‘Terms of Reference’ on a website is also a type of ‘low-hanging fruit.’
Activities & Sustainability
Subsequent activities depend on your project plan. Similarly to research, having clear goals and methods informed by evidence are key to success. One thing to consider is whether your group will accept requests from others, in which case a procedure for handling requests may be beneficial (see Appendix O). Sustaining involvement is challenging, but can be promoted by regular communication and activities, acknowledging contributions and providing members opportunities that matter to them. However, personal circumstances and interests change over time. Loss of members is thus to be expected. Recruitment and addition of new members can, however, inject new energy and enthusiasm to your PPIE initiative, thus promoting engagement and sustainability.